scouts-l Mail Archive for April of 2000: This is several days of consideration, my apologies its too long
Thu Apr 13 2000 - 14:29:48 CDT
Most of you know the stories I have of my son Chris. I'll brag of my
18-year-old Eagle/Silver recipient, I'm amazed by my 13-year-old who they
wanted to make skip a grade. And the two year olds ability to understand
amazes me. But Chris is my hero. Brief synopsis for those just tuning in:
Born while I was at Philmont
Could not hear for two years
Surgery and then addition of tubes to prevent infection and he could hear
Special education started after problems getting school district to evaluate
him ("We only do that once a year")
Seemed to be learning, then stopped. Seemed hyperactive. Teachers asked us to
see if there was a doctor who could help us get him on a medication. Doctor
#1 told us he was retarded and a dwarf. Doctor #2 didn't believe either of
those things and wanted to control him through his diet, which worked a bit.
Doctor #3 will be where we pick up this saga. Remember, he's now 5 and Dad is
already thinking about what we do come Tiger Cub time....
We'd been asked by the pediatrician to go to this doctor a floor up from her
with Chris before, and every time we had to find someone else. The first time
it was for speech therapy, and we were told we had to wait 3-6 months for an
appointment. We found someone and coughed up the money out of pocket because
they weren't covered by insurance. And then got him into the special
education classes the State of Illinois says every school district must
provide to try to get these special needs cases up to speed by age 5 for
The same thing happened this time, we were asked to get Chris on something to
control him better at school and get him to sit still so he could learn
better. The first doctor was the "He's a dwarf" guy -- who incidentally tried
to charge an outrageous fee (you could have had two shrinks listen to you an
hour and not gotten to that amount) for a 15 minute look at the kid, which I
did NOT submit to my medical insurance company but instead told off and never
paid a penny. The second guy was patient and helpful, the diet calmed Chris
some but not enough. He also wasn't covered by insurance so I paid for the
psych work and all.
Anyway, going through all of these doctors we finally came to the date set
months in advance by this place we were supposed to try. So we did. I was
First, they do a three hour evaluation of a kid before they take them as a
patient. In a room full of toys and such they let the child loose and they
stand around and play like kids while watching what he does. (Ahem. He
evidently loves being observed by several females in a confined space.) They
ordered blood work I'd never even heard of and since they are on our health
insurance we paid a grand total of $15. Evaluations are only done twice a
week, and you can only cram at most three into a day, and that delays the
process of getting accepted. If only whoever sets the appointments had
EXPLAINED all of this two years ago we would have stalled until we got in
then! And the MD, when she found out they didn't, was ticked. Anyways, we
started the drugs and we've been doing well. Relatively, he is still Chris,
especially when the dosage wears off.
We're still getting calls about the tests as results roll in. One was a
genetic test that came in two weeks ago (and is why, those of you who got
responses from me way late, I am way late). Besides every other thing that
Chris has had turn against him in a five year lifespan, he has another strike
coming up. Or maybe its all related.
He has Fragile X Syndrome (fra x from now on, folks). I've been going around
tagging sites and looking and recently asked Auntie Beans for some
references, but it breaks down to this one sentence every time I come around
another page: 'THE leading cause of retardation' and continues on that its
also mainly a problem for males and that it includes the hyperactivity, at
the very least a learning disability which makes the two years of lost
hearing even harder, and more. (So it turns out even the guy I refused to pay
may have been partially right, maybe he deserves a few bucks....) Odds in the
general population are 1 in 1000.
YOU HAVE NO CONCEPT WHAT THIS CAUSES IN A FAMILY. (Repeat that sentence to
yourself whenever there is something you cannot believe in this or future
messages, or you have someone with a special needs child come walking into a
You have a child you are pouring every last ounce into, practicing words,
reading, learning parts of the body, all the games little kids play except
this "little kid" is 75 pounds, half as tall as an adult, and strong enough
to knock me over if he wants to.
Pouring so much into him that the other kids are a little jealous, even one
of those who is old enough that he should understand better (13 and in love,
probably, which just makes it worse). You have a son in college who asks a
biology prof about fra x and it becomes a research project for the teacher
("Give me all those web addresses you found, dad"). You have a 2-year-old who
you try to explain it all to -- and who will now repeat loudly to anyone who
seems remotely interested -- "I have to learn to do things faster than my
brother so I can teach him". You have yours truly trying to learn all he can
ASAP. And you have mom....
Realize this: If I have chromosomes that are XY and all mom's have XX and to
have a boy I coughed up a Y and she coughed up an X, we have a mom who,
although currently in denial, *knows* she must have carried the gene that
caused this. She won't talk but the fear, pain, anguish, frustration is
pouring over and she has to go to the genetics lab for a test. As soon as son
#1 gets here he needs to also so he has a concept of whether this is
something that he could pass on to his kids if they are girls (I'm betting it
shouldn't be possible, but my lessons in genetics in the 70's, I've learned
in a week, puts me at the same playing level to the modern guys as I was to
Mendel and his projects with peas....) and #2 as soon as we get through
either this first romance or junior high, whichever comes first, makes a
similar trip. Might as well let them be confident what could happen to their
own children so they, as parents of the future, can make intelligent
So in the last few days I've been called every name you can imagine, watched
the denial grow (to the point that, even though she KNOWS that females are
the carrier for this, she has accused me of being responsible for it) and
waiting for the fear that will start about three days before her blood test.
Nothing I do is right, nothing will ever be right again, and even the words
"I hate you" and "I should divorce you" and the scariest to me "Well, HE'LL
never be an Eagle Scout, so there!" pour out in efforts to hide what is going
on in the back of her mind.
And seen her latch on to #4 to the point the kid loves it, wants to be with
mom and only mom, and dad can do nothing to help him.
And hey, thats the easy part.
Now the scariest part. Chris is learning like a demon. My father-in-law used
to work installing Macs in schools and selling them to school districts, so
we take advantage of the price breaks he still gets. There are two Macs in
the basement and Chris not only has learned how to play games on them since
he started the drugs, he has gotten to where he ENJOYS playing them. He knows
his name when its written out, but can't co-ordinate enough to learn to type
it himself. He started playing some educational stuff I acquired that
actually keeps a file of the abilities of each child who plays it and has me
flabergasted. He knows his colors, but not his shapes. He only listens to
instructions half the time. He doesn't understand what the letters of the
alphabet are but he knows what order they come in and can follow them even if
you start in the middle - as long as you don't try to complicate it by making
him pick it out from the letter in a name, there is no way he understands
that "L" is the same as the first letter in "Lucy", for example. And for the
last few nights when he wants something instead of just pointing and making
noises until he gets whatever he wants he points only if he doesn't know the
word and if you ask him and its what he's hoping for he answers with a
garbled but understandable "Please". Most amazing of all, after three years
of him calling everyone but himself "me", he has the concept down pat and is
He can run a VCR, we learned the hard way. And knows not only how to get a
chair high enough to find the microwave popcorn but also how it has to sit in
the machine and the buttons to push to make it pop without burning. He knows
how to play a CD.
OK, learning disabled I'll buy, but....
And mom is too busy with her own problems to even notice all that is changing
around her. She notices only the things that he hasn't changed, the things he
does out of habit, the things he does when he's mad and can't explain, the
things he does that -- I now believe are done with good intentions, but he
doesn't know his own strength -- seem to me like trying to protect his
brother from something and accidentally pushing him down and the like. And
cannot control the anger in herself that overflows whenever something goes
I was feeling pretty good, I had cut down on outside activities and events
like you would not believe. Heck, I had even hoped to try to find a new job.
Now I find myself looking around and hoping that the insurance company isn't
going to drop us for overflowing the bills (or raise the rate beyond the
ability to pay for it, same difference). I wonder about how to handle
Jamboree next summer and have done all I can to make this summer time home
with the family.
And none of it is enough.
More after the blood tests are over and the truth sinks in. And dad starts
finding out what his rights are in Illinois in fighting for his kid
for/against the schools (whichever the case may be) and getting help. Also
need to find a few support groups and lists similar to S-L over the next few
weeks, I'll bet.